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Need to find out what's wrong with me
To whom it may concern,
My name is Jeff, I am a 38 year old male, and I have the life style and general well being of what would be expected of a 90 year old man in poor health. I've been seeing doctors here in Orlando, and getting test after test, and panel after panel of blood work, and no one can seem to come up with an answer, other than the fact that I have been exposed to the Ebstine Barr virus in the past. I've also had IBS and CFS thrown into the diagnosis, and the classic depression diagnosis as well. But it's a cop out, they don't have an answer, and yes I do have some depression but I think after years of feeling terrible and spending thousands on Doctor visits and procedures and testing anyone would be a little depressed.
Sorry I'm ranting :0)
Here's the deal...
About 10 years ago this all started with chronic sinus infections when I moved back to Florida from New Mexico. I had a constant sinus infection from 2007 till 2011 and saw many different doctors and specialist. I had septum surgery and remained on antibiotics and steroids for most of that 5 year period, I was never off these medications for more than 2 weeks max. Finally, I self diagnosed a fungal infection that I read about that people can get in their sinuses and took a brief round of Diflucan. That was the silver bullet for that issue, but during that time period I developed incredible fatigue and weight loss, I thought I was going to die. But, I figured it was due to the over use of antibiotics, so since 2011 I've being countering with probiotics and a pretty substantial amount of vitamin supplements. I wouldn't call it "Megadosing" but quit a bit, I take a multi, extra 1000mg of C and a Zinc/Magnesium/Calcium. I also take a half of a Zyrtec once in the morning and once in the evening.
Also, this might be significant. I was prescribed an awful drug called Effexor XR back in the late 90's for anxiety. I thought the side effects (which are substantial) might be contributing to my condition with the sinus infections so a began to wean off about 2009 and was off completely by 2013. Again, this is a terrible medication with horrendous side effects, especially when getting off, so the fact that I was on this stuff for so long might be an important factor. I do also take St. Johns Wart now because I was having severe panic attacks while coming off of the Effexor.
So anyway, I did marginally better from about 2013 till about a couple years ago. I didn't feel great, but I was for the most part functional and felt like I was managing my symptoms and felt optimistic that I was on the mend. But, as I mentioned I started having panic attacks a few years ago, sever ones that put me in the hospital twice. My blood went cold, my hands and feet went freezing and then went numb, I'd have a resting heart rate of about 220. these were terrifying, and they happened constantly though out the day. I was also having indigestion, so I had an endoscopy and it revealed that I had a bleeding ulcer, which the doctor thought might be contributing to the panic attacks. So, now I'm managing my symptoms with Colonzopan, not much now, I was taking a lot but the panic attacks have subsided drasticlly so I'm taking about .5 ml a day, mostly at night to help me sleep, and pantoprazole for the stomach, which I'm trying to get off, I've been on it for over a year.
Ok, so that's the last 2 years or so, this is where I'm at as of today. Every night my heart races at bed time which is when I take the Colonzopan. I'm constantly bloated and belching, even with the Colonzopan I never get a full night sleep, averaging about 4 hours. I'm up and down with all kinds of strange sensations, trouble breathing, hot/cold, stomach pains and nausea, panic attacks, racing heart, and other things that I can't even really describe. I urinate constantly, like every half hour. I've stopped sweating all together, no matter how hot I am, even though I'm usually not, I'm usually freezing cold, but my skin feels really hot. If you feel where I was laying down on the bed after I get up it's like there was a heating pad there. I'm obviously exhausted all day, I feel like I'm going to throw up and I feel like I'm going to collapse at any moment, I'm dizzy, my eye's are beat red all day. It's amazing I haven't been fired because they probably think I'm smoking weed. My left front side hurts constantly, right about at the bottom of my rib cage. My stomach constantly hurts and I can basically only eat oatmeal, even that gives me uncontrollable loud belching. I usually feel the worst in the mornings and evenings, after lunch I usually feel a little better, but still not well, I just don't feel like I'm going to pass out in the afternoon, usually. I have my not as bad days and my worse days.
Anyway, I've scoured the internet and asked all my various doctors and specialists about every possibility and know one seems to have any answers. I don't know if anyone will actually read this, I know there's a lot of these sorts of dialogue's on the internet and I sure didn't get anywhere by asking for help from Dr. Hyman. But if someone does read this, any help, guidance, or recommendations would be greatly appreciated. I don't know what else to do.
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I just watched the TED talk. Wow, she was almost telling my same story. I'm one of the semi functional cases she refered to. I can work at my office job, but spend the weekend in bed recovering. It's also interesting that she brought up how infection like Ebstine Barr has been linked to this condition. I am going to contact the Jacksonville location and begin the process of setting up an appointment. Thanks again for your help.
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5 ReactionsHi Jeff (@jeffrow), glad you had a chance to watch the TED Talk video. It really is inspiring. If possible, we would love to hear how your appointment goes.
John
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4 Reactions@jeffrow Hi, friend. I think I have written earlier, but I have been thinking about you, and need to pump out a little more for you and others. I can only speak from experience and what I have picked up from others. First, There is a company in the UK called "Bindings UK" which puts out many tests and assays for a rainbow of diseases. Any good lab, such as ARUP or Quant (MAYO) will have access to their work. Here is a list of some of their products which I picked up from their Brochure on Multiple Myeloma. (Get their material by Internet.):
• *SPEP = Serum Protein Electrophoresis. Multiple Myeloma (MM) Waldenstrom's (WM) Smoldering MM *SMM) Primary LiteChain (AL) AL Deposit Disorder
• Serum IFE = Immunofixation Electrophoresis; AL, LCDD
• Serum FLC = Serum FreeLiteChain© AL, LCDD
• SPEP + Serum FLC= initial dX screen for MM, WM, SMM.
• Urine PEL/IFE = Protein Electrophoresis / Immunofixation Electrophoresis. © Bindings UK. AL, LCDD
I have also made reference to Bindings in my story, in pdf, at: https://bit.Ly/1w7j4j8 "Amyloidosis.....
I think everyone on this list should get the available materials from Mayo, AmyloidosisFoundation.org, Bindingssite.com, Alnylam.com and any other sites available. Frankly, one never knows what you might pick up, or from where. Just use your head, and push your doc to get started. All these are covered almost completely by Medicare., especially SPEP and sFLC and sIFE. One last suggestion, Make sure that you are on Plan F or G on Obamacare. The plans cost a little more, but they cover almost everything.
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2 ReactionsThank you very much for including me on this information. I would have thanked you earlier but when I tried to reply shortly after you posted this the site was down, so I had to make a note to myself to circle back and thank you later. I have an appointment to see my GP this week and I'll see if it's possible to have these tests included in my panel, hopefully they will provide some insight.
Thanks again and happy holidays!
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1 ReactionAsk about Lyme. One of my co workers is on at least a year leave for EB and what is now Lyme and many co bacteria. Lyme is hard to identify. I hope the CDC recognizes it soon. Good luck. Your story sounds like my life and I am so close to disability.
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1 ReactionI just watched the TED TALK....I wanted to cry. This is me and I have to find energy to get the help my son needs first who has CG.
Train wrecks here:(.
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1 Reaction@johnbishop as one who is new to this, can two family members be treated?
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1 ReactionHi @kellye5 that is a really good question and I would definitely ask the doctor. There are so many autoimmune issues and I know some can be genetic.
I have polymyalgia rheumatica (PMR) and idiopathic small fiber peripheral neuropathy (SFPN). I was recently corresponding with my cousin who is a couple of years older than myself. I found out he also has PMR and neuropathy like myself. He thought it might be that both of our cases are related to genetics. I just got my results back from the Genes for Good which is a free geneology test but you have to use a Facebook app to participate. After you do a bunch of daily surveys and a health survey they will mail you a spit test which you send back to them. It takes 2 to 3 months before you get your results back but they will let you download the raw data. They show your heritage info in a nice chart and some other stuff. I've been told you can download the raw data and send it to a lab and they will interpret the raw data for about $10 or so. https://genesforgood.sph.umich.edu/
John
Thank you for this information. I will look into that asap. I am beginning to wonder about some of the symptoms I have in relation to my son with CG.
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1 Reaction@jeffrow
I have taken Clonazepam 1mg (Klonopin) for 13 years, at bedtime, for anxiety. I have idiopathic peripheral neuropathy, both small fiber neuropathy and autonomic neuropathy, for which I've been attempting to treat for several years. I had a spinal cord stimulator implant in June, which has reduced the burning pain in my feet.
Some of the symptoms you described are similar to those of autonomic neuropathy. I suppose that you or your doctors have considered that possibility.
I wish that I lived close to a Mayo Clinic. I think they would quite possibly figure out what's really going on with my health in a short period of time. Instead, I've moved at a snail's pace to learn that I don't have a lot of diseases, from a parade of specialists over the course of ten years. But, Oregon is a long way from any of their clinics.
I hope that you find solutions soon. It's not easy to live for years with symptoms such as yours. May you find good health in 2018.
Jim
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